Tuskegee's ghosts: Fear hinders black marrow donation

Story Highlights

• Bone marrow more likely to match within ethnic groups • Blacks 8 percent of registered bone marrow donors, 12 percent of population • Fear and mistrust of U.S. medical system often cited

By Elizabeth Cohen CNN

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(CNN) -- In 1982, transplant surgeon Dr. Clive Callender and his colleagues sat down to took a look at African-American organ donation numbers, and they were grim.

While blacks represented about 12 percent of the U.S. population, they represented only about 3 percent of organ donors.

This was terrible news for African-Americans in need of an organ, who were much more likely to make a genetic match with another African-American donor.

Callender knew he had to try to change those numbers. And knew it would be a huge challenge. "People along the road said we wouldn't be successful," he said. "But I was well accustomed to adversity, to reaching for unreachable stars and impossible dreams." (Read more on notable black scientists. )

So Callender and his team at Howard University College of Medicine in Washington, D.C., didn't listen. Instead, they went into African-American communities in their city to find out why the organ donation rates were so low.

Over and over, they heard the same reasons, including that African-Americans wouldn't sign organ donor cards because they didn't trust the U.S. medical system.

People in the community remembered the Tuskegee experiments, when doctors in Alabama purposely withheld treatment from poor African-American men with syphilis from 1932 to 1972.

Some blacks worried that by becoming organ donors they might unwillingly become a part of another medical experiment, or that white doctors would prematurely declare them dead in order to harvest their organs.

Armed with this knowledge, Callender and his colleagues spent the next two decades going into the African-American community in Washington, D.C. Church by church, health fair by health fair, they persuaded African-Americans to sign organ donor cards.

Doctors in other cities soon followed their lead. And they soon started seeing results. In 1982, nationally there were eight organ donors per million African-Americans. But by 2002, there were 41 organ donors per million African-Americans, according to the National Minority Organ Tissue Transplant Education Program.

"We followed Martin Luther King's example of grass-roots efforts and organized accordingly," Callender said. "We expected to make a small impact and instead we made a big impact."

Calling Callender a "pioneer," Joel Newman, a spokesman for the United Network for Organ Sharing, said Callender's work "has helped identify and address many misconceptions the public has about organ donation and transplantation."

But this dramatic increase in African-American organ donors has not happened for bone marrow, where there's a different system for obtaining donors. Currently, only 8 percent of people on the national list to donate bone marrow are black, but about 12 percent of the population is black.In bone marrow, even more so than for solid organs such as kidneys and livers, it's important to find a donor of the same ethnic group. (Join the National Marrow Donor Program. )

A matter of life and death

No one understands the need for African-American bone marrow donors more than Jessica Pasley of Franklin, Tennessee. When her twin daughters, Jillian and Jade, were found to have leukemia as toddlers, she and her husband worked with churches and other groups to organize bone marrow drives. The Pasleys, who are African-American, never got more than about a hundred people from any one church. Pasley says she saw white families get about 1,500 potential donors from one church. (Watch Pasley describe her frustration)

"We went to black churches. We sought the help of black organizations," she said. "It makes me angry, frustrated, and actually sad. ...There's a medical crisis. People are dying every day because there's no one available to donate marrow."

By the time the Pasleys found a donor for Jade, it was too late. She died when she was 2 years old.

The Pasleys did eventually finally find a donor for Jillian, who's now 9 and cancer-free.

When Pasley asked why there was such unwillingness to sign up to become a marrow donor, her grandmother told her it went back to Tuskegee.

"'And I said to her, 'Do you realize how long ago that was?' " Pasley said. "There's a mistrust in the black community of the medical community, but there's got to be a time when you say move forward, move on to help your own."